Our journey continues….( a look at our ancient way of healing- Ayurveda and mindfulness meditation)

I am back! I am back with more stories to tell, experiences to share and hopefully some tidbits of information which might help another parent to cope with their child’s eczema along the way. Only a parent who is a first hand witness to their child’ s suffering due to this skin condition ( and any other such chronic medical conditions)  will be able to empathise with another family’s pain, exhaustion and some times negative thoughts that can arise out of dealing with sleeplessness, social and psychological impact that eczema can have on on a child. And that is what keeps me going to share what works for us ( most of the time) and what products, methods etc help in dealing with my daughter’s eczema.

Our introduction to Ayurveda

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I had recently taken my daughter, Aiyana to an ayurvedic hospital ( IAIM Healthcare centre – an Institute of Ayurveda or Integrative Medicine) in the outskirts of Bangalore (the capital city in the southern state of Karnataka). I was not looking for a quick fix solution or a cure to her eczema, but just exploring other traditional methods of Indian medicine which go back a very long way and seeks to heal from within. My hope is to see if our traditional medicine has something to offer to help my daughter to control her eczema in the long run without the help of other powerful medications like she is on currently.

A rigorous process

At IAIM Healthcare Centre, she was first put on an increasing dose of medicated ghee ( it is a type of clarified butter made by simmering the butter made from the milk so that it gets caramelised which gives it the unique taste and aroma) along with a severely restricted diet. This was done to remove all the toxins from her body prior to starting medications, since Ayurveda considers ghee to be satvik ( in the mode of goodness)  and is the main ingredient in many traditional Ayurvedic medicines. She was given this for 4 days till her body was saturated with ghee (as they could make out from her stools). All this while she was ONLY allowed a diet of fruits (non citrus) and plain khichdi (which is a preparation made from rice and pulses); she was also not allowed to go out anywhere but stay in one place in a warm environment to facilitate this process. The 5th day was the day of purging and she was given a laxative in order to prepare her for the medicines to follow from the next day. All this while she was given a daily medicinal ghee massage and a warm bath mixed with herbs.

An interesting change

One very interesting change that took place during this time was that her skin condition was the softest and the smoothest I had seen in some time. While Aiyana’s immunosuppressive medication continued at the same level with no change, her skin condition improved dramatically with all the diet restrictions (and no other medicines). However, once the medicines started the next day and her diet restrictions eased up, her skin condition slowly came back to normal in the next few weeks. I guess her extremely restrictive diet played a key role in improving her skin condition during the first week at the ayurvedic hsopital (even though it is simply not possible to continue with this kind of diet for more than a few days).

However, Ayurvedic medication demands that one follows a restricted diet since certain food types do not go well with the ayurvedic medicines. Hence, Aiyana has been asked to stay away from fermented products (inc yeast based bakery items) like yogurt, dosa, idli etc; all citrus fruits and vegetables like oranges, lemons, tomatoes; root vegetables like cauliflower, potatoes; other processed and refined foods like white rice and refined sugar; leafy green vegetables. She has also been advised to have everything cooked in ghee. As you can make out it IS a difficult way of life to follow since it does not involve only medication but also a whole lot of changes in one’s diet. In any case, she has been very cooperative and we have been able to follow most of the food restrictions so far.

Our goal

The goal of Ayurvedic medicines according to Dr Gangadharan (who is the Head of the Dept. and treating my daughter) was to strengthen her immune system from within so that over time her body was naturally able to bring the severity of her eczema within a manageable level. I will keep you posted on her progress and any changes as far as Ayurveda is concerned. We have been back in Mumbai for 3 weeks now and her skin condition has come back to normal. I will however have to continue with her Ayurvedic medication for some more time if I want to give it a chance to work. I will also be taking her for a follow-up to IAIM Healthcare Centre next month in order to assess her progress, change in medication etc.

The good, the bad and the ugly

It is always a case of a mix of good days and bad days for her even with her medications. And since there are various triggers to her flare ups, it is nearly impossible to pin point and avoid the the same completely. This leads to a  yoyo like swing in her moods making it difficult for her and all of us especially on those bad (and ugly) days and nights with her itching and inability to sleep. I have already touched upon this psychological impact (which can lead to lack of self-confidence and social skills) and I have described how I have been dealing with it in my daughter’s case in my post Beauty is not just “skin” deep- helping your child cope with eczema.

Let them sleep, for when they wake…they will move mountains

We have been grappling with sleepless nights ever since she was 1-year-old (even though her condition was mild at that time) and when you add to that the mild eczema that my 4-year-old son has as well, you can see that it leads to a lot of sleepless nights and fatigue for the entire family. It is an aspect of eczema ( and Atopic Dermatitis in particular since it affects children) that severely impacts a child’s well-being leading to lack of concentration in school and a lack of self-confidence amongst other problems. It also one issue the entire family (which has children suffering from Atopic Dermatitis) will have faced some time or the other. As a result I have been searching for a way to improve our quality of sleep (without further use of medicines) by reducing stress levels and learning relaxation techniques.

Mindfulness Meditation

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To this end I have been reading about a form of stress reduction technique called ” Mindfulness Based Stress Reduction”  (MBSR) program developed by Dr. Jon Kabat-Zinn at the University of Massachusetts Medical Center. It is meant to work by making one more “grounded” or “aware” of the present moment and simply means paying attention in a particular way: “on purpose, in the present moment, and nonjudgmentally” as described by Dr Kabat- Zinn. In this post, I will be just touching upon this topic since we have just started following the same ourselves.

My goal in trying to incorporate it in our daily life is very simple – to help my daughter reduce her stress and frustration levels and hopefully cope with her medical condition better with time and practice. The good thing is that one does not have to be a Buddhist to practice this though it has its roots in Buddhism, Taoism and yoga. Mindfulness is the art of conscious living so that you live a life being who you are already and not try and be someone that you are not. Hence, one’s religious beliefs does not interfere with this practice.

Meditation and coping

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I am using the book and CD combination- “Planting Seeds: Practicing Mindfulness with Children which is based on Thich Nhat Hanh’s (a Zen Buddhist monk) thirty years of teaching mindfulness and compassion. They are designed to help relieve stress, increase concentration, nourish gratitude and confidence, deal with difficult emotions and improve communication.

While we have just started practising this, Aiyana has been enjoying our daily sessions of “deep relaxation” before bedtime since it is helping to calm her (and me) down quite a bit and relax. While it is too early to comment on the results of practising this, I can say that it has made a slight improvement in her sleep quality. And anytime that she wakes up feeling itchy, the music is soothing enough to lull her back to sleep most of the times. I am also planning to use another well-known book for practising mindfulness meditation with children – “Peaceful Piggy Meditation” by Kerry Lee Maclean for the same purpose.

Be happy for this moment, this moment is your life

And in the end, this is what matters. How well we lived our life, how well we loved, how we counted our blessings along the way; how we learned to accept the things we simply cannot change and faced our most difficult moments. This is the lesson I strive to teach my children, one lesson that I am myself learning every day of my life.

 

 

The only journey …is the journey within

I have been juggling a lot of balls in the air lately and in the midst of doing that I have fallen behind in my blogging lately. But I am happy to say that there have been some developments at my end with regards to my daughter. Her schooling is one of the things we have been dealing with and thinking about for the past six months or so. As I have mentioned earlier, Aiyana is currently on a low dose of immunosuppressive medication to control her eczema. I am sharing our experiences in the hope that it might help other children who are in a similar situation in some way.

Education and eczema

Inspite of the immunosuppressive medication, her eczema becomes worse when she sweats since her itching increases considerably. Aiyana’s school, Bombay Scottish in Mumbai, has been very supportive. She is excused from any outdoor activities including the school assembly, helped with her moisturisation and medications as and when required and generally taken care of as a whole. We make sure that she is picked up from school in the afternoon by car and does not have to travel in the hot sun while coming back home. But even that is not enough to help with her to cope with the sweating and itching and scratching at school.

As you would be aware, Mumbai has a tropical climate and is humid almost the throughout the year being close to the sea. She started missing school on a regular basis due to heat rashes and eczema flare up ( in India, only schools following an international curriculum are air conditioned). She would itch all over and therefore scratch in the class with a constant fear of being seen by her classmates. After consulting her doctors we finally decided to move her to a school with an air conditioned environment which we hope which would be more comfortable for her. To this end we did a 2 week trial in a school (based on international curriculum) with an air conditioned environment. This was possible entirely due to her dermatologist who helped to arrange this for her. At the end of 2 weeks it looked like it did seem to make a difference and she was quite comfortable in this environment. However, it still took us a while to decide on and finalise a school for her and our son (who starts school this summer).  This process is finally over and just last week we secured admission in an international school closer to home. Both my children start school in July and I am hoping that my daughter will be able to attend school regularly without the discomfort of constant itching due to sweat and subsequent scratching and pain.

A medical condition like this does not end with medications and visits to the doctor. Life is a constant struggle to carry on with routine activities on a daily basis under the onslaught of an unbearable itch (especially when there is a flare up). My 7 year old daughter used to be in constant fear of being seen by classmates while feeling the unbearable urge to scratch in odd places.  As I read somewhere recently, “eczema can be compared to a bully who sometimes keeps going for days on end, then leaves, only to reappear“.

Sleep deprivation is an added burden to bear for such small shoulders due to the itching and scratching at night at times. Even though Aiyana’s medications keeps  her eczema under control most of the times, there are frequent phases when it becomes worse due to stress, illness or other triggers. Antihistamines do not seem to help much in her case at night time and it is a difficult time for us as a family. It in fact happened very recently due to her illness and seems to get aggravated during times of ill health due to any reason whatsoever. While those nights (and days) seem to be a never ending cycle of itching and scratching, it is very important to provide constant support and keep your child’ spirits high. I try to make sure that I do not portray a defeatist or negative attitude and distract her as much as possible and find ways to make her itching more bearable (like rubbing instead of scratching).

Ayurveda- an ancient Indian way of life and healing

I am taking Aiyana for 2 weeks to I-AIM Health Care Centre near Bangalore (in the southern state of Karnataka) for an Ayurvedic check up and treatment. It is founded and run by Padmasrhi Darshan Shankar, known for his outstanding contributions in the field of revitalization of traditional systems of health-care in India. Ayurveda is not simply a healthcare system, but a form of lifestyle adopted to maintain perfect balance and harmony with nature thus making it a wholistic system of medicine. I am hoping that our traditional and alternative form of healthcare is able to complement and control my daughter’s eczema and help her in the long run. I will write more about it later once we are back from our trip. 

 

 

 

 

 

 

Nutritional supplements- worth a try

Through interaction with other parents whose children have eczema, I have come to know that in some cases  nutritional supplements like Omega 3 oils, probiotic ( probiotics are organisms such as bacteria or yeast that are believed to improve health and are available in supplements and foods) and multi vitamin supplements have helped to lower the incidence of flare ups in childhood eczema and bring some under control. There is no concrete scientific evidence as of now to prove this conclusively and studies are going in some of these areas. Due to this, doctors rarely prescribe these as part of the normal course of medications for Atopic Dermatitis. But after reading up on these and consulting Aiyana’s doctors about the same I decided to try the Omega 3 and the probiotic supplements for some time for my daughter.

Probiotic

Omega 3 oilI did a lot of research on a suitable and safe product (and brand) for Aiyana ( there are many brands and types of Omega 3 oils and probiotic supplements worldwide) and based on the reviews, some literature etc I shortlisted the 2 products as given below-

 Nordic Naturals Omega 3-6-9 Junior and Rainbow Light Probilicious  Gummies  for children.

Aiyana has been taking these supplements for a few months now. I will be able to share our experience only after a reasonable period of time as these kind of steps usually work in the long run and the impact might not be immediately visible.

 

Its time to turn life’s stumbling blocks into stepping stones

A cnikihronic medical condition like eczema is rarely only a physical struggle, a lot has to do with an immense amount of inner strength that is required to cope with this on a daily basis. My daughter has to deal with the obvious consequences like physical discomfort, sleeplessness, fatigue as well as the social, emotional consequences of dealing with this condition everyday. It is as much my responsibility to make sure she is as comfortable as possible at a physical level as it is to ensure that she is equipped to deal with this condition at an emotional level keeping her self-confidence intact. She has grown stronger emotionally as a person since her traumatic month long ordeal in the hospital last summer due to an unforseen reaction to a medication given to control her eczema. (I have written about our experience in the post- “…the tough get going- part 2”)

I know that I have succeeded to a large extent in my endeavour when friends, families and even complete strangers praise my 7 year old’s cheerful smiles, her sweet and caring manners and her emotional strength.

Azathioprine and Cyclosporin ( an overview of two immunosuppressive medicines used to control my daughter’s eczema) from a parent’s point of view

I seem to be putting up a post quite infrequently off late but I hope to change that soon. In my defence I can only say that I have been enjoying myself too much and was quite tied up with my brother’s wedding late last month. It went off very smoothly and now the happy couple are spending quality time in Thailand.

Those of you who follow my blog and have read my earlier posts know what happened with my daughter due to the drug Azathioprine which was given to control her otherwise very severe eczema ( I have covered this in my post ….the tough get going Part II). I am pretty sure that other parents like me who have had to either put their child on this kind of immunosuppressive drug or have had to contemplate giving it go through the kind of jitters that I do from time to time.

I am very well aware about the reason and benefit of giving this medicine to my child without which leading a normal life for her would be almost impossible given the severity of her eczema at this point in time. But it does not stop me from thinking of all the possible side effects in the process of controlling her eczema especially given the life threatening consequences of giving her azathioprine last year. It is like having Hobson’s choice in this matter which means there is really no choice at all. I am sharing our experience with you in the hope that it may help you decide what is the best line of treatment for your child with the doctor’s support and bring a smile to your child’s face by making living with severe eczema bearable.

Hobson’s choice

IMG_1262By the time we gave Aiyana azathioprine last summer, we had exhausted all the other possibilities of various triggers like allergens, environmental causes like hot or cold temperatures, irritants like detergents amongst others. We also had an intensive moisturizing and bathing regimen to control her eczema but without much success. We had tried out all levels of topical cortisteroids and immunomdulators, wet wrapping therapies, phototherapy and oral steroids all of which are usually enough to manage mild-to-moderate atopic dermatitis. Although some mild cases of atopic dermatitis can be managed with emollients (creams, lotions and ointments) alone, there are some people who might require treatment with either topical corticosteroids or immunomodulators. When all these medicines and other measures to minimize environmental influences (elimination of allergens, dust mites, irritants like detergents and heat, perspiration and dry climates) fail, systemic options like oral steroids (prednisolone) and non-steroidal immunosuppressant agent such as azathioprinemethotrexate, ciclosporin or mycophenolate are often considered.

Azathioprine and cyclosporin- 2 different types of immunosppressant drugs

In Aiyana’s case azathioprine was prescribed by a leading pediatric dermatologist in London after doing a battery of tests including the enzyme test called TPMT (thiopurine methyltransferase). This enzyme plays a critical role in the chemical breakdown of azathioprine that is, in the way the body gets rid of this drug.  If a person is TPMT deficient, the effect of a particular dose of azathioprine will be exaggerated, and it could therefore become toxic to the bone marrow and hence the TPMT test is mandatory before giving this drug. Azathioprine has been in existence since the 1960s and was initially developed to prevent organ rejection and has been used for many years in the treatment of severe eczema. It is an immunosuppresant drug that is also known as antimetabolite. It hinders the growth of lymphocytes (a type of white blood cell) which are involved in inflammation associated with eczema. Azathioprine is given by mouth, usually once daily, and most often in the form of tablets of 25mg and 50mg.  It is also available in the liquid and allows more precise dosing for young children.

Cyclopsorin is another type of immunosuppressant drug which was also originally used to prevent organ rejection in transplant patients. It is in fact derived from a type of fungus. Even though the cause of Atopic dermatitis (eczema) is not completely understood and there is no cure as of now, what is known that immunological reactions occur in the skin of people with eczema and these are controlled by white blood cells (lymphocytes) that enter the skin from the blood. Cyclosporin decreases the production of chemical messengers which “switch on” these lymphocytes and thus dampen down strong allergic and immune reactions. It is available as capsules containing 10 mg, 25 mg, 50 mg and 100 mg of cyclosporin, however for children the liquid form is easier to give as a dose (one formulation is called Neoral®).

Side effects

Azathioprine has a very serious side effect and that is  ‘bone marrow suppression’, or ‘myelosuppression’.  The bone marrow is the site of production of the most important types of cell in the blood: the red cells (RBCs), the white cells (WBCs including neutrophils and lymphocytes) and platelets (important for blood clotting). White blood cells are critical in the body’s defence against infection, and if their numbers fall drastically (as did happen with my daughter),there will be a risk of potentially serious and even life threatening infection. Over the years it became clear that the patients who developed serious bone marrow suppression generally did so because they genetically inherited low TPMT activity. As mentioned earlier, this enzyme is essential in the chemical breakdown of azathioprine and thus has to be within a particular range for a person to be given this drug.

But no tests are really 100% foolproof as we saw in my daughter’s case. In spite of her test results being absolutely bang in the middle of the normal range and thus determining her dosage, within 3 weeks of putting her on this drug, she was hospitalised in the ICU with a life threatening infection due to severe “neutropenia” or an abnormally low number of neutrophils as a result of azathioprine induced bone marrow suppression. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood.

Hence, as in my daughter’s case, she developed life threatening infection and it was only the prompt and quality of medical attention, broad-based and potent antibiotics and antifungal medicines that saved her life. The dermatologist who had prescribed this drug had never seen this reaction in the many years that he has been successfully prescribing this drug to other children with such severe eczema. It became clear from my daughter’s reaction that there are other genetic variants that can be missed that can also make occasional patients susceptible to such severe adverse effects even while having the desired TPMT levels and these have possibly not been studied or accounted for.

Cyclosporin on the other hand is a potent immunosuppressant and starts to work very quickly (within 1–2 weeks) and the side effects of cyclosporin are almost all ‘dose-related’. Hence the side effects depends almost entirely on the dosage a person is taking although some people are more susceptible to the side effects than others. It cannot be given for long since the longer this drug is taken the more severe the side effects become. The main side effects of cyclosporin are hypertension (high blood pressure) and reduced efficiency of the kidneys (renal toxicity).  Blood pressure and kidney function need to be checked before treatment and monitored closely throughout treatment.

Regular and strict monitoring 

As with any such potent drugs, one has to be extremely particular about monitoring the relevant organ functions throughout the course of treatment. In Aiyana’s case, blood tests are a regular feature and she has almost come to terms with it. Initially I used to take her to one of the premier hospitals in Mumbai but in the past few months a phlebotomist has been coming home to collect her blood sample. He was referred by Aiyana’s pediatrician and is very gentle with her and it has made a world of difference as far as her blood collection is concerned especially since she has to go through this on a very regular basis.

In the case of azathioprine, the blood count levels become extremely important to monitor on a regular basis to check for bone marrow suppression. The medical protocol followed worldwide in the case of azathioprine is to undertake a blood test 3 weeks after starting treatment, then 12 weeks after starting treatment, and thereafter every 3 months if all the results are normal. However, as a learning from our traumatic experience, I would urge you to be on the side of caution and undertake the blood tests for your child every week for the first one or two months and then gradually space it out as per your doctor’s advice if there is no abnormal result. Such regular blood tests are a painful thing especially for a child but it is a necessary evil and must be carried out. These tests normally comprise a full blood count (mainly to check that white blood cell numbers – particularly neutrophil numbers – are not falling below normal levels), and liver function tests to ensure that the liver is not stressed.

When cyclosporin is given as the immunosuppressant, since kidney is one of the main organs which is affected, kidney function will need to be monitored regularly particularly the serum creatinine levels since any condition that impairs the function of the kidneys is likely to raise the creatinine level in the blood. It is thus important to recognize whether the treatment is leading to kidney dysfunction or not. The other important level to be monitored are the cholesterol levels since the reduced efficiency of the kidneys can also adversely affect the cholesterol levels leading to increased risk of heart disease.

Medicine that heals is not always sweet and caring words are not always pleasant

The main reason I chose to write about these 2 powerful drugs is that while there is a lot of information available about these drugs today on the net, it is not always easy to get the most relevant facts. One can get lost in too much of information all of which might not be completely relevant to a parent but more to a medical professional. Information about the plethora of side effects and adverse reactions from these drugs is also enough to scare away any parent from giving these to their children. I have tried to compile all the relevant and important information a parent should know before giving this drug to their child and bring it in one place.

The plan of these kind of treatments to control very severe eczema is, first, to achieve major improvement in the severity of a child’s eczema and then if possible to see it clear completely, though to achieve this may take several months or even years. We have had no choice but to use this treatment on our 7-year-old daughter and I hope that our experience and learnings come of use to other children afflicted with this condition in a severe form which usually affects their lives on a daily basis.  Of course, it is not easy for a seven-year old to take this medicine twice a day and undergo repeated blood tests, but as her caregiver I do not give her any option not too simply because we do not have any. We will have to evaluate her medication in the next few months and then go ahead with the next course of treatment based on her doctors’ recommendations.

I also wanted to share our experience with azathioprine so that other parents can take an informed decision while giving this drug and not repeat our mistake. One can simply never be too cautious where one’s child is concerned.

“Being a mother is learning about strengths you didn’t know you had, and dealing with fears you didn’t know existed”

20131213_180745Aiyana now lives an almost completely normal life with minimal itching and with not much outward physical manifestations of this skin condition which has had an adverse bearing on her social life in the past. I know we are all doing the best we can with the best possible treatments available at this point in time though I am forever in search of other better options that might come our way in the future.

Even then there are some moments that I am plagued by some doubts as to whether we have done everything that we could have to prevent her eczema from being so severe or something else we have not tried so far. I am so grateful for being given a second chance with her and I am sure all those who know her and are greeted by her sunny smiles would agree with me when I say there must be something we are doing “right” after all.

You can only fill the glass of another….if your pitcher is full ( a note to the parents of children with eczema)

Seasons greetings for the new year!!  A new beginning…a new year filled with HOPE

It has been a while since I last put up a post. I have been traveling a bit and have also been a bit tied up with my younger brother’s upcoming wedding later this month. Having said that, I have missed penning down my thoughts since I have come to realise that there is a certain therapeutic value in sharing one’s joys and sorrows with other like minded people. It definitely makes the load one carries a lot lighter.

There are a lot of parents out there like me who are struggling to take care of their child and who are sometimes overwhelmed mentally and physically. And irrespective of whatever the medical problem is, I know only too well how helpless one feels to see your child suffering. But oh what a feeling it is to see one’s child get better and see the innocent smile on her face once again! I was lucky to have been given a second chance with my daughter last year and I do appreciate this gift, a lot of other parents are not as lucky.

So far so good- an update

The good news is that my daughter’s eczema (Atopic Dermatitis in her case, there are different kinds as I have discussed in my earlier posts) has been kept well under control for the past couple of months under the immunosuppressive drug, Cyclosporin. So the influence of oral steroids (prednisolone) has been waning and the sudden spike in her cholesterol levels last month (one of its side effects) has now receded. However, these kind of powerful drugs can usually only be given for a limited period of time and that also under strict monitoring via regular blood tests. Blood tests are thus a regular feature in our house and I have managed to have a gentle mannered phlebotomist who makes the process as painless as possible.

We will have a medical review coming up in a few months time when it will be seen whether the medication can slowly be phased out or another drug has to be introduced, but that’s a worry for another day. Till then I intend to keep trying to figure out if there is another way to help get Aiyana’s eczema under control.

Taking care of oneself

A lot of times, we as parents get so busy taking care of our children, we forget to take care of ourselves. This is especially true for those whose children have chronic health issues. But it is really important that you as a parent (parents are usually the primary caregivers in the case of their children) take care of your own physical and mental health at the same time. This is of course easier said than done and close to impossible in times of crises, but should be definitely taken seriously at most other times. If we have to be our child’s source of constant strength and love during difficult times, it is all the more important not to neglect ourselves.

It doesn’t get easier, you just get better

And I know exactly what I am talking about. My 6 year old daughter was in the ICU for 3 weeks last June out of which the first 2 weeks were critical. There was only one place I wanted to be and that was by her side everyday. My husband was partly in the hospital and partly taking care of our 3 year old son at home and our family and friends were our source of strength and support during that difficult phase. However, I was the one keeping vigil by her bedside every night since I needed to do it for her as well as for myself. I was extremely stressed and upset and hardly got more than a few hours of undisturbed sleep at a time amidst all the flickering lights and constant beeping of the monitors in the ICU. But somehow I kept going night after night with just a few hours of rest the next morning.

I now realise that my regular schedule of exercise in the past few years played a major role in enabling me to continue to be there for my daughter for those 3 weeks without any break. Regular exercise in any form is  a must to build stamina and ensure you are in good health to provide the best care for your loved ones.

The time to relax is when you don’t have time for it

This is true especially in times of crises when there is not even enough time to breathe properly. However, that is precisely the time when you have to remain as calm as humanly possible to make the best possible decisions in the interest of your child and provide the best support possible. The time when our children need us the most is usually the time when a parent is under tremendous stress and reels under the responsibility that comes with being a parent.

When I used to see the small form of my daughter lying in the ICU bed, the weight of the responsibilities of being her mother were the heaviest. I did not have the luxury of breaking down at any point in time. It was only my passion for reading which helped me relax and destress myself for a few minutes at a time each day. I used to read sitting next to her at night just to take my mind of all our problems and uncertainties even if just for a short while. There were of course times when my mind used to be crowded with all the negative possibilities and a feeling of helplessness, but relaxing even for a short while at night helped me prepare myself for the next day. It helped me to cope with the same problems just a wee bit better, but sometimes that itself makes a lot of difference.

Find your own way of relaxing, it is not only worth it but also essential for a caregiver.

I cant promise

 I can’t promise to solve all your problems, but I can promise you won’t have to face them alone

This is my promise to Aiyana and one I know that I will always strive to keep. A lot of times it is not possible for a parent to make our child’s suffering go away, but we can make sure that our children are not alone in their fight against eczema. Eczema differs from a lot of other medical problems in the way it affects a child’s physical appearance, nutrition, lifestyle, sleep and can be triggered by a host of factors like humidity, external irritants like house dust, perfumes, detergents, stress amongst others. This makes it difficult to control this condition in many cases and hence needs much more than just the medicine prescribed by the doctor unlike in other childhood diseases like chicken pox, measles etc.

The process of controlling and improving eczema can be quite labour intensive apart from being disruptive to one’s normal way of life but needs to be done nonetheless. A lot of long term lifestyle changes (including food related ones) may be required apart from a time-consuming skin and bath care routine for the child on a daily basis ( I have discussed both in my earlier posts- “Eczema- a change in lifestyle” and “Bath time! ( And skin care routine for eczema)”). Of course, the hardest part of being a parent is watching a child go through something like this and not being able to fix it for them…and just like me I know you are doing all you can.

“I may not be perfect, but when I look at my children I know that I got something in my life perfectly right” 

How true! Sometimes, in chronic and severe medical conditions like Atopic Dermatitis the condition makes itself blatantly visible. It manifests itself in the form of rashes, thickened and dark skin and in severe cases, weepy patches and lesions. It is easy for a child to become a target of ridicule and taunt like my daughter has been subjected to and it can have a negative effect on a parent as well. But to each of us blessed with a child, we know that our child is perfect in our eyes and will be loved no matter what their physical appearance (on which our society places such an importance).

So I hold my head up high and I am teaching my daughter do the same every day, for the rest of her life. I encourage my daughter to lead a normal life and hold her hands on those days her self-confidence falters.

At the end of the day, love is learning how to take excellent care of yourself so that you can take phenomenal care of the ones you love.

Eczema and diet (gluten free)

Eczema has been known to be affected by diet in many cases especially in the case of children. Eczema can be triggered or made worse by many things like house dust mites, excessive humidity or dryness, pollen, stress or by eating certain foods amongst others. In the case of many children with severe eczema, food maybe one of the causes but in the case of a few children it maybe their only trigger.

When Aiyana’s eczema became worse in June 2012, we did her blood allergy test which looks for specific allergen-related antibodies (IgE or immunoglobulins which is one of the 5 sub classes of antibodies) in order to identify her allergy triggers. I was really hoping that by finding out her food triggers we would be able to control her eczema which was worsening and slowly spiralling out of control. But I also knew that food is very rarely the only trigger and hence changes in diet alone cannot by itself help control eczema without the support of a good skin care and moisturizing routine.

Her results came back positive for most of the 29 allergens we had tested her for  showing high IgE levels for tree nuts (like hazelnuts, walnuts), house dust, sesame seeds. Her total IgE levels were higher than normal and surprisingly the test showed positive results for wheat, oats, lemon as well. As her pediatrician put it so well when she explained the results to us- “ Aiyana’s skin is like an angry person, such a person will react to most triggers at this point in time”. By the time we had got these results, we had seen her skin condition deteriorate continuously since October 2011 in spite of trying out the entire range of moisturizing and topical corticosteroids arsenal as and when required but to no avail. I decided to control her diet for the next year or so in the hope that it would help improve her eczema since it has seemed to help some other children. Since surprisingly for us she had a high positive outcome for wheat in the test, I really hoped that it might have been a key trigger for her eczema becoming worse over the past year or so.

In any case I was determined to leave no stone unturned in trying to control and improve her eczema. Hence I made certain changes in her diet, the most difficult part of which was making it “gluten-free”. I have decided to share my learnings that I gained by doing a lot of research on this unique diet, its availability in our country and ways in which I made sure Aiyana was able to follow this at home and more importantly outside as well.

GF

LUCKILY for us, we did a much more accurate skin scratch test for her in May this year and gluten was ruled out as an allergen and slowly we were able to introduce wheat and other forms of gluten without any issues. 

Gluten free??

In a country like India where allergies and diet restrictions are not very common and awareness is very low, the challenges of following a “gluten free” diet increases manifold. And when I had to explain dietary restrictions to a 6 year old child (and to others around us) and ensure that she follows it, I had to  make a lot of changes to the way we thought about food. Gluten is the protein complex found in wheat, barley and rye whereas oats is inherently gluten free but invariably suffers from cross contamination with other such grains. It gives elasticity to the dough, helping it keep its shape and And it is found in, well almost everything and I mean EVERYTHING!! I never knew it was all invasive till I had to list down foods that did not have gluten.

All the breads, pastas, noodles, Maggi, cakes, desserts, all the kinds of Indian breads like naans, rotis, wafers, biscuits and a host of other child friendly and convenient foods were a complete NO NO. The positive things about this was that a) it automatically made me look for healthier alternatives and more home cooked foods without high levels preservatives, sugar, fats and salt b) my daughter did not have coeliac disease which is an autoimmune disorder affecting the small intestine which has reduced inability to absorb nutrients from the food and only a COMPLETELY Gluten free diet helps. In fact, I had not even heard of this condition till I started to find out more about gluten free diet. Even now I have heard of just once child having this condition which is still comparatively rare in India. For a person having Coeliac disease, even a very small exposure can lead to seizures, osteoporasis and growth issues in children. In my daughter’s case I did not have to worry so much about cross contamination in the kitchen or the dust from wheat, maida (refined wheat flour) affecting her health since it did not affect her to that extent.

We never truly realise what we have till we have till we have to live without it

However, food was to become a huge challenge for us. I changed our flour options from wheat to others like jowar (sorghum), bajra (pearl millet), ragi (finger millet) but not completely successfully. For a child who is accustomed to the taste of wheat, it is a HUGE change.And it is definitely easier said than done. I started making pancakes, chapatis (a type of Indian bread) out of jowar, unsuccessfully tried to give her other food options made of ragi and bajra. She just didn’t like the taste. Luckily, a diet followed predominantly in southern India is made of rice and includes dosas, idlis and uttapams (a kind of crepe, a steamed preparation and a kind of pancake with toppings respectively) and which my children love. Also since one major staple food is rice for us (especially true for Bengalis like for me from the eastern part of India), I started giving a lot of snacks made out of rice for her school lunches and the like.

Variety is the spice of life

True to my nature, I did some more research and found out gluten free recipes through some amazing blogs and websites like www.glutenfreeconfessions.com and glutenfreegoddess.blogspot.in (the first one is my favourite one). They helped me get started on a journey which was different from any other. I learned to appreciate how difficult it is for people who are on restricted diets. I also made sure that for most parts, my whole family followed the same diet as my daughter. I also figured out ready mix gluten free products which were available in India and how to get them if they were not. This opened up a lot more options for us which were also tastier and convenient as a whole. I got bread, pancakes and other flour mixes from Orgran, Pamela’s products and Bob’s Red Mill, Schar from various places. Orgran as a brand was the only one readily available in Mumbai at that time. ( There are of course many more such brands available world wide to cater to a vast segment but I have not used any of those other brands.) But thankfully things have changed for the better in the last year and a lot more products are now available in India both offline and online. I am listing some of the products and their availability in our country-

  • Orgran Gluten free products – Foodhall at Phoenix Mills, Godrej Natures Basket in Mumbai
  • Bob’s Red Mill Natural Foods– Foodhall at Phoenix Mills
  • Bob’s Red Mill, Schar and Orgran products are also available on websites like http://www.healthyworld.in/,  http://www.gourmetco.in/ and http://www.foodesto.com/ which deliver all over India
  • Pamela’s Products are not available in India, I had to arrange for them from US

orgran

schar

I have used all of the above mentioned products apart Bob’s Red Mill. My favourite was the bread mix from Pamela’s Product which turned out quite close to a regular bread and almost as tasty. For someone like me who has never had to bake bread in her life, the end result was pretty decent as compared to when I was trying to make the same from scratch. However, I did manage to bake bread, cake and the likes from scratch using gluten free ingredients with mixed results. I would like to also list the ingredients that are available incase you are willing to try your hand at this as well-

  • Zero G – An Indian brand which has products like potato starch, corn starch ( not corn flour), GF atta and maida mix for rotis etc and other basic GF grains like sorghum etc. It is available in large grocery stores and online in the websites mentioned earlier

zero g

  • Conscious Foods– another brand which has all kids of organic GF grains and flours like bajra, ragi, jowar etc
  • Bob’s Red MillGuar gum and Xanthan gum powder, both of which are essential to emulate the binding property of gluten in regular foods

A child’s dilemma

However, the most difficult part was to ask a 7-year-old to stop having what she had been used to eating so far and it was worse when she had to attend birthday parties and other social events. I had to prepare her mentally and then send some homemade cakes and even other foods so that she could eat something at the birthday parties. In most cases, I spoke to the hostess and asked them to have a couple of options for Aiyana if possible (and even had to refrain from sending her to a few of them).  Also in India, since these kinds of allergies are uncommon, there are hardly any options in terms of restaurant foods, bakeries and at social events (apart from the South Indian variety). It was a difficult time, but she knew that she was not supposed to eat a wide range of food and she did refrain from eating them. I started baking a lot more at home and even managed to make, cupcakes, muffins etc for her with the help of some of baking mixes which I sourced. Luckily for a mother like me, there are a lot of like-minded people in the world who have shared their gluten free recipes and other ideas which really helped us to adjust to this challenging diet.

kites

And finally, a kite rises highest against the wind, not with it

And so it is with my daughter. While I would certainly not wish for her or anyone else to go through these challenges which seem to cross her path ever so often, most of the times we do not have a choice but to face them head on. While my daughter has been put back on a regular diet from June this year, the 11 months or so when she had to follow this diet was a difficult time for her since it added to the challenges she faced already due to her severe eczema.

But I can already see the strength in her which helps her to lead as normal a life as possible and her will power which has increased by leaps and bounds in the past year or so.

I know now the she has the strength to not only rise against the wind but to soar to dizzying heights …

Beauty is not just “skin” deep- helping your child cope with eczema

beautiful-inside-and-out1-

They say “Beauty is only skin deep” and I agree with them. But in most of the cases “they” do not have to cope with eczema. Only someone who is living with eczema day in and day out knows how difficult it is not to wilt under the stares, looks and occasional taunts of other people. I might not know it first hand but I do feel the pain every time my baby tells me a heartbreaking incident of another child (mostly) who teased her or commented on her looks, weight etc. It is very hard for me not to cry in front of her and/or find that person and go charging at him or her and give a piece of my mind. I myself have been blessed with good clear skin and I would give anything to change places with my daughter in this regard.

I do know that however difficult it might for both of us, the best way I can help her is by teaching her to be strong and to be prepared to answer questions from other inquisitive children and people. I also remind her often that we are proud of her and that she is a brave girl. Because, as much as I would like to protect her from all the hardships related to her eczema, I know that I cannot be with her all the time. And a major part of her struggle is not just physical. It is a mental struggle just to accept the reality of this chronic condition as well as to cope with it. Add to this she is just seven years old and you can see what I mean. Thus, a big part of the support is to teach my daughter to live with severe eczema and be happy in spite of it (till the time she grows out of this or we are able to find a way to get rid of it).

I still don’t have the answer to her question ” why did this happen to me and not anyone else?” And perhaps I never will. But what I do tell her is that she is not alone in this and though she might not realise it there are so many other children like her who have severe eczema and other different serious medical problems. But, unlike other medical conditions, eczema makes it difficult to hide the condition due to its physical manifestations. This is one major aspect which makes it so difficult to cope with.

There are moments when my daughter will keep asking me the same questions over and over ” when will my skin get better?” and ” will next year be worse?” ( her terrible experiences with eczema this year and last is the one which prompts this question and has been captured in my earlier posts). I can only reassure her that it will and next year will be better but I am unable to put a timeline to it. I do not want to make empty promises to her but at the same time I need to keep her spirits high (which is easier said than done). I constantly reassure her that all her caregivers including her family and doctors are looking out for her through her medications and other measures. It comforts her to be reminded often that she is not alone in this.  I am sure that those of you who have children with similar chronic conditions would be doing everything 24X7 to keep your child in good spirits. I decided to share some of the things that are working for us (well most of the time).

“Stop scratching” doesn’t help

There a lot of times that her itching increases significantly. I have realised that she simply cannot stop scratching when she sweats a lot or is very stressed or sleepy and saying “don’t scratch” will not help. Luckily, she is a creative child so I have been able to somewhat distract her by helping her do some craft activities, drawing and painting and puzzles at various points in time and reading to her and even singing together. These are things which interest her and help her calm down. Thus she is able to relax mentally and the antihistamines seem to work faster. I have also just started doing yoga with her ( with the help of short videos of yoga meant for children) as another way of controlling her stress and helping her relax. I hope to give you a positive update on this in the future.

A child counselor or psychologist 

I recently took Aiyana to meet a child psychologist as we had been planning for some time. Her doctors and I agreed that it might help her to speak to a third person (especially to a trained professional) since hers is a chronic condition and in light of all the trauma that she has been through in the last couple of years. Lately, she had also been complaining of nightmares with regards to her itching and skin condition (this seems to have stopped in the past week or so). When I took her last week it was heartening to be assured by the psychologist that Aiyana seemed to be a happy, balanced child in spite of all that she has endured in her young life. Still, Aiyana was very happy to have someone in authority listen to her problems (apart from her parents and doctors) and so I will be taking her occasionally for counselling.

You are not the only one

This is one thing I keep repeating for both our sakes. I have to remind her that there are many other children ( and other concerned/stressed parents like us) like her out there even though they may not be part of our friends and family.What  gives her some measure of comfort is to hear the inspiring stories about other people who battle their own demons, handicaps, debilitating conditions and have still managed to live life on their own terms. She especially loves hearing about true, inspiring stories of children with physical disabilities who have succeeded in sports and others with serious medical conditions and yet led happy lives. I am motivated by encouraging stories of mothers who have moved heaven and earth to enable their children suffering from severe eczema live a comfortable and happy life and of some other mothers who have gotten rid of it as well.

Aiyana with her doting uncle

Aiyana with her doting uncle

You’re beautiful inside and out

My darling Aiyana is the sweetest daughter that anyone could ever have and one I could have ever wished for. Her complete hair fall earlier this year has caused her much heartbreak and she still endures teasing from other children from time to time about “looking like a boy“. All those times when she cries her heart out because some child in school has told her she has such bad skin or try to peek under her scarf and tease her about her lack of hair, this is what I tell her. That no matter what one looks like on the outside and no matter how much emphasize is on one’s looks, what matters is that she is a loving, caring child who makes our world a better place to live in.

“When life gives you lemons, make lemonade”

If life gives you lemons make lemonade retro poster

And last but not the least, this is our new-found motto. I have shared the secret of living a happy life (in spite of all the problems) with my daughter – ” just add some sugar” when your life is filled with lemons (I have even managed to find and buy a tshirt for her saying the same thing- she is very happy wearing it!).

We try to look beyond the pain and look at the possibilities as well as all the achievements. This helps us to look at a future filled with hope and a determination to live life by enjoying each and every moment. And if that is not enough, I can always count on loads of hugs and kisses to lessen the pain for my daughter (however momentary it might be).

We laugh and make our very special ” lemonade”  on those days that seem overwhelming.

 I hope you can find a way to make your own with your child as well!

Related posts:

When the going gets tough…(Part 1)

….the tough get going (Part 2)

Eczema- a change in lifestyle

Many of you would have already read my last post recounting our nightmarish experience as parents where our daughter went through “severe neutropenia” as a result of “myelosuppression” (where her bone marrow had effectively shut down due to an immunosuppressant given to control her severe eczema). Yet, we have managed to pull through after a harrowing time earlier this year and since then things have come back to normal (well almost).I have mentioned briefly in my previous post about some of the measures I have taken at home and the changes in our lifestyle to ensure that no stone is unturned. I have been inspired by many parents who shared their experiences through their blogs, websites, forums, support groups and other social networks.

The first thing is that there might be no “one” particular thing or action that will help you to control your child’s eczema. It is usually a combination of things like regular moisturizing, topical application of steroidal creams, oral medications in severe cases and other such factors. But many parents have also been able to control their child’s eczema (or at least improve) through some lifestyle changes. I have done the same for my child and though in my daughter’s case her eczema is quite severe and is managed through medications, I never give up hope that these measures might be helping her in some way or the other. In any case, I am quite willing to make whatever changes that are required to be one step closer to help Aiyana lead a comfortable life and I am sure you will do the same for your child if required.

Some steps I have taken

1. I changed the laundry and dishwashing detergent for the entire household since that was the first thing most parents mentioned as a key trigger for flare up for eczema in many cases. Infact, last year, when Aiyana developed Erythroderma was the time when I changed the way we do our laundry. It was definitely difficult in the beginning to completely redo the way we do our laundry. I had to find out about product availability in India, their suitability to our climatic and water conditions and train my help to use these products. But through trial and error I have managed this effectively and for the past one year now I have completely eliminated synthetic detergents from my household and use only natural products to do the same.

I wanted to find a natural cleanser free of most chemicals (especially SLS and SLES) and came across our very own traditional “reetha” used by our previous generations for laundry as well as bathing purposes. Luckily for me, soap nut (or reetha as it is called in hindi) is produced primarily in India and Nepal. The fruit contains saponins which is a natural surfactants (foaming agent) and have been used for thousands of years in Asia for washing.

I thus started using soapnuts instead of regular and baby laundry detergent for all our clothes since no matter how “gentle” the detergent, they all contain “sulphates” as surfactants or foaming agents. Unlike other cleaning products which contain the harsher surfactant or foaming agent- Sodium Lauryl Sulphate (SLS), the laundry detergents usually contain the gentler version Sodium Lauryl Sulphate (SLES) and a host of other chemicals and preservatives.  I have written about this in details in my earlier post -“Bath time! (And skin care routine for eczema).

I buy a soapnut brand called 108 Soapnuts from a Bangalore based company called Daily Dump  through their website. There are also several other websites like  naturalmantra.com and greenngood.com amongst others which promote an eco-friendly and green way of life and stock this brand. As far as other household linen and delicate clothes are concerned I use various forms of a natural, SLS and SLES free laundry detergent made by a brand called “Rustic Art” . They have laundry powder products made of soda ash, lemon and neem extracts, bio degradable liquid laundry cleanser made of natural glycerin and bio degradable laundry bars made of non edible oils, lemon and neem.

(Source: http://solveeczema.org/http://www.cleaninginstitute.org/clean_living/soaps__detergents.aspx)

Rustic Art laundry powder

2. I also changed my dishwashing detergent from the usual detergent based ones which contain sulphates and preservatives and  other chemicals. I started using a powder made of  shikakai, soapnut and dried lemon peels by the same brand Daily Dump and have been successfully using it to clean utensils by hand for more than a year. However, there are several other options to make one’s own dishwashing detergents by using natural ingredients like castile soap, vinegar, glycerin, borax (NOT boric acid), citric acid, baking soda, essential oils (for fragrance) amongst others. 

(There are quite a few blogs and websites dedicated to green living which have recipes to make on your own and a couple of examples are – http://www.rodalenews.com/homemade-dish-detergent and http://mymerrymessylife.com/2012/02/homemade-dishwashing-detergent-100-green-2.html).

 While I have not made dishwashing detergent at home yet, I have used an automatic dishwasher product free of phosphates, chlorine and other chemicals. It is a plant-based product which is fully biodegradable and is made by a company called Earth Friendly Products and is called Wave Auto Dishwasher GelI use it intermittently in my dishwasher as and when required (it is available on amazon websites in UK and US).

3. One of the other major trigger for eczema in children is dust mites which is a tiny insect found in every home. While it is not possible and practical to get rid of it completely one can reduce the incidence somewhat by following a few steps that I have followed

  • I have gotten rid of soft toys and soft furnishing from the children’s bedroom (one should remove carpets if any especially from the bedroom)
  • using “dust mite proof” hypoallergenic covers for the mattresses and the pillows; Portico has a range of such products available in India
  • I changed the heavy drapes that we used to have and started using light, cotton curtains which do not hold as much dust; also I change them every month
  • I also make sure to change and wash all our bed linen every week (ideally one should wash the bed linen in hot water at 50 degrees Celsius or more)
  • I have also purchased a steam cleaner ( Morphy Richards is available in India) and use it once a month on the mattresses and upholstery; it is more effective than a vacuum cleaner since the heat kills the dust mites without the use of chemicals
  • I am planning to test the bedrooms for dust mites using a test kit to figure out whether these measures are working or not using Ventia™ Rapid Test for Dust Mite Allergen; I will update you once I have done so

Ventia Allergen test

These are some of the steps that I follow diligently at home and now these changes in our lifestyle have become second nature to me and my family. I believe that even if these measures do not directly and measurably improve my daughter’s eczema (at least in the short run) they do not harm her either. They are changes that I am willing to make and so have a lot of other concerned parents whose children suffer from allergies, eczema, asthma and other related conditions.

It really helps to know what has worked for others and I keep myself updated about the way other parents try and make their homes and environment more green and healthy for their children and incorporate some of the measures from time to time. I hope that you might also find some of these useful and beneficial for your child in the long run as well.

If nothing else it will open up a whole new world of eco-friendly and green living for you and your family like it has for me!  

 Incase you have any suggestions or questions please do feel free to get in touch with me. 

Related articles-

..the tough get going (Part 2)

 

..the tough get going (Part 2)

It has been a very tough year for us and we went through the worst nightmare that any parent can ever face. But in the end, we have come out stronger as a family. And though we still have a long way to go, I am grateful for what we have and I know I will never give up this fight for my daughter’s chance at a happy, normal life.

(Please bear with me- this post is a bit long since there is a lot to cover and I do not want to break the continuity)

Family time!

Family time!

It was end April 2013 when we went for our 2 weeks trip to UK. We had a lovely time overall in London and Wales. The weather was amazing in London and we enjoyed the sun and outdoors. Aiyana was not happy that we took her to meet doctors in the middle of our holiday but she was a good sport about it. She was once again on oral steroids since mid April after being put off any medication since February. Her phototherapy had been going on as the solo treatment, but her skin suddenly started drying up very fast towards the middle of April. And within a few days her skin condition deteriorated rapidly and became absolutely dry and scaly and very itchy. She was immediately put back on oral steroids since that is the only thing that works for her immediately. Her skin condition was thus stabilised and was brought back under control.

In London, we took her to meet an experienced pediatric dermatologist at the well-known The Great Ormond street Hospital for children. We were extremely impressed with the hospital and its facilities catering exclusively to children. He gave us the confidence and hope that he would be able to manage her skin condition with the help of a immunosuppressive drug called Azathioprine. He has been using this immunosuppressive drug to control in children with severe eczema like Aiyana for the past 15 to 20 years. He assured us that it was able to control the eczema in most children and could be given to the children continuously for up to 2 years under strict monitoring. Also, once the drug was stopped after 2 years, the eczema did not come back in many of the children. They diligently carried out a series of tests on the children before starting the medication including an enzyme test called TPMT test.  Apart from the TPMT test, all her test results came back within a week and were all normal. Only her TPMT test result was left and that would take 3 weeks to come.

TPMT is an enzyme which is a critical element in determining the suitability of this drug for a patient and the optimum dosage,. One of the main side effects of Azathioprine is that it could very occasionally and unpredictably provoke adverse effects on the bone marrow. It was seen that patients on this drug who developed this serious and life threatening bone marrow suppression usually did so because they did not have this particular enzyma called  thiopurine methyltransferase (TPMT for short). This enzyme is essential in metabolising the drug in the body and its deficiency in the body could lead to toxicity in the bone marrow resulting in ‘bone marrow suppression’ or ‘myelosuppression’ at a particular dose of Azathioprine.

The bone marrow is the site of production of the most important types of cell in the blood: the red blood cells (RBC), the white blood cells (including neutrophils and lymphocytes) and platelets (important for blood clotting). Since White Blood Cells (WBC) are critical in the body’s fight against infection, any large fall in their numbers can lead to serious infection which can become life threatening. Hence, we had to wait for the test  results to come back before we could begin this medication under her local dermatologist’s care.

In the meantime, we also met a pediatric allergy specialist at London’s Guys’ and St Thomas’ Hospital. He gave us quite a few pointers on her allergies, but more importantly, we were able to finally rule out most of her allergies with a much more accurate (and painless) skin scratch and patch test. These tests confirmed that she was in fact, not allergic to wheat, sesame, soy, dairy and quite a few other allergens which had shown high IgE levels in her blood allergy or RAST test. I was really happy that finally we would be able to remove her dietary restrictions (especially gluten) almost immediately. He also mentioned a home rapid allergen for detection of house dust mite allergen called Ventia™ Rapid Test for Dust Mite Allergen  from US based INDOOR Biotechnologies. I have finally bought it online in the UK and it should get delivered soon. ( I will cover these other measures that I have taken at home in a separate post)

We then came back to India in mid May and waited for her TPMT results to come out. Finally they did, and her results were very much in the normal range. The doctors gave the go ahead for Azathioprine and the TPMT test helped determine the most effective dosage for Aiyana. As per the protocol, she was scheduled for a complete blood test for blood counts (WBC and RBC), liver and kidney functions 3 weeks after the start of the medication. Her oral steroids dosage had already been tapered down gradually and Azathriopine was started on the recommended dosage.

We started the medication and after a week or so I started noticing a darkening of the areas where her eczema was most prevalent inside of her knees, elbows and the back of her neck. Also, her nails became dark as well due to the drug. The doctors were not extremely concerned at that point in time since we were  expecting some changes due to the drug. In any case, we knew that her comprehensive blood test was scheduled for 19th of June and so continued her medication for almost 3 weeks.

And then all hell broke loose.

I remember vividly it was the 15th of June, Saturday when she started losing clumps of hair. And I mean clumps/big bunch of hair just literally falling out of her head every time she moved her head or touched it. I got horrified just looking at it but managed to hide the issue from her at that time. I got in touch with her pediatrician and dermatologist in Mumbai on Saturday and they both got concerned but none of us realised the extent of the problem since there were no other symptoms at that time. I could not reach her dermatologist in London since he was travelling and unfortunately for us even her pediatrician went on her scheduled break to London that week. Her blood tests were scheduled for Wednesday, 19th June, and we knew we would come to know if something was amiss very soon. It was a very upsetting time for all of us just seeing her hair fall out like that and keep on falling. Then she developed fever on Monday evening and since her own pediatrician was on leave, I consulted another doctor who gave her some medicine to control the fever. However, her fever shot up to 104/105 F the next night and we took her to see another pediatrician referred to us by a friend on Wednesday morning.

By this time we knew something was seriously wrong with her since her fever was hardly coming down and I was awake all night sponging her head and body to bring it down. But even at that time we did not realise how serious her condition was. Fortunately for us, the pediatrician took immediate action and sent us for a lot of tests to Breach Candy Hospital directly once we told him the medication she had been on and her very high fever. We did the tests and brought her back home only to be called by the doctor within a couple of hours and was asked to immediately admit her in the hospital. In retrospect, the pediatrician’s quick response was to save her life.

Our nightmare begins

Immediately after she was admitted to Breach Candy Hospital, she was taken to the Surgical ICU by the resident haemotologist since that was the only available place at that time which could take care of her by keeping her in isolation through “barrier nursing” (nursing with utmost precaution with respect to very high rsk of infection).  We came to know that she was suffering from “myelosuppression” which had led to “severe neutropenia”.  These words were to haunt us for the next 1 month and were the very same adverse side effects which were supposed to have been ruled out by the TPMT test. In other words, her bone marrow had effectively shut down and her body was unable to resist any infections and had caught a severe infection as a result. Her counts were

  • WBC- 290/μL                                                                                                                      (Normal range- 5,000-10,000 /μL)
  • Neotrophils (a component of WBC critical in fighting off infections)-  0.00(Normal range 40-75% of total WBC count)
  • Haemoglobin- 9.2 g/dL or  grams per 100 mls                                                       (Normal range- 13-18 g/dL)
  • Platelets- 54   (Unit: x10^3/uL) ;                                                                                   (Normal range – 140-440 units)

Aiyana was put on the strongest broad spectrum antibiotics and anti fungal medicines to help her fight the infection. Since her bone marrow had practically stopped working, she was totally dependent on the antibiotics and antifungal medicines to fight the infection for her.

Life in isolation

She was thus in isolation in the ICU and only the doctors and nurses were allowed to see her and they had to wear masks, gloves and gowns and take utmost precautions so that she did not catch further infections. Even Sudip and I were not allowed to be close to her initially and could only see her from a distance. At night however, they relented and let me sleep on a chair close to the door of the ICU cubicle in my mask, gloves and gown. Initially, we were allowed to go close to her only occasionally when she cried for us in pain or looked for us when she was awake. Most of the times in the beginning she was just too weary and ill from her little body fighting off the infection and the onslaught of medicines and injections and slept through most of the day. From then on for the next 2 weeks for my baby, each day was filled with injections for antibiotics, IV fluid injections, oral medications, an injection directly to the thigh bone to stimulate her bone marrow which was extremely painful. By this time, she had also completely lost her hair apart from a few tufts here and there.

Our life then

I cannot describe the pain and trauma she went through and I cannot describe in words my feelings as I came so close to losing her. My whole family and I just went through the days in a haze and I lost track of the days and other details of my everyday life. I knew only that I had to be strong for her and that I did not have the luxury of breaking down. The doctors tried their best put up a brave front but one could see that they were also extremely worried and not totally confident of the outcome. I truly came to know what the phrase “living one day at a time” meant. Each night I used to pray, hope, fight despair at various points in time sitting in the ICU that the next day would be a marginally better one. The pain and trauma that she had undergone last year was a cake walk compared to this. Through it all I tried to lift her spirits through reading her books, playing her favourite movies on the Ipad. Towards the end she was allowed to indulge in some painting and colouring activities to keep her occupied.

I will never forget the one question that she used to ask me every day and night ” mamma, when can I go home? Please take me home with you”. The days went by in a blur and there were 3 haemotologists working on her case apart from her pediatrician (who had come back to India by then), her dermatologist and all the resident pediatricians at Breach Candy Hospital. I will remain forever grateful to all the doctors and nurses who gave her a second lease of life.

Sudip and I managed to pull through for our daughter’s sake only with the help of our immediate families, friends and well wishers. We had a lot of friends and acquaintances who came forward to help us out by donating blood and platelets which we required on a regular basis. Our friends also kept my son company at home and gave me company at the hospital whenever required.

The turning point

Finally, after a nerve-wracking 2 weeks to the day she was admitted, came the turning point on her birthday on the 4th of July. My daughter’s birthday was the first day after she got admitted that the doctors declared her to be slowly on the road to recovery and out of danger. Thanks to the nursing staff, nutrition and diet team at the hospital who had arranged for a lovely birthday cake, we celebrated the good news. I think I started breathing once again that day and after that it was a very slow but definite road to recovery.

We used to all wait with bated breath for Aiyana’s full blood count every morning to monitor her recovery and  the doctors would adjust the medications accordingly.  She essentially had to undergo blood tests every day for 3 weeks that she was in the ICU and countless other injections including IV fluids. Later, the doctors were to say that it was my darling, brave Aiyana who gave them the hope and courage to fight this infection for her. My 7 year old daughter somehow managed to find the strength to greet us and her care givers with a smile and gave Sudip and I the strength to look for the silver lining when there were only dark clouds around. She was discharged with almost normal blood counts about 4 weeks after she was admitted.

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Life for us today

Today Aiyana has completely recovered from the ill effects of the drug but her eczema remains as severe. We had given her this medicine knowing the dangers since we have had no choice but to help control her extremely severe eczema that restricts her from leading a normal and comfortable life. But inspite of taking all due precautions and following due protocol our daughter’s life was put in extreme danger. As far as the doctors (in UK) have been able to guess, this happened due to a so far undiscovered gene that makes one highly vulnerable to this side effect. We will get her DNA testing done eventually to prevent this from happening to any other child.

If only we had been extra cautious and monitored this drug on a weekly basis instead of after 3 weeks as per the protocol for Azathioprine. But this is all in hindsight as we (including her doctors) truly did what we though was best for our child. As a parent, you can learn from our experience as we have done the hard way. You cannot be too cautious in monitoring any drug that you give your child no matter what the protocol is or what the doctor says.

Since her hospitalisation, her eczema was kept under control with the help of oral steroids. She has been on oral steroids for more than 6 months now and it needs to be tapered slowly since it has its own side effects. She has once again been put on the same immunosuppressant drug Cyclosporin (she took it well without showing any side effects) she was given last year to control her eczema which has remained as severe as before. However, I am continuously exploring other options which I have to take up very cautiously given our recent experience (but that is for another post and another day since this is one is already too long)

I do not give up hope that I will find a better way to control my daughter’s eczema and help her lead a normal life. I owe it to my brave little girl who has shown us what being strong is all about. You should take heart from our experience and continue to fight for your child.

After all, what does not break us makes us stronger.

Bath time! (And skin care routine for eczema)

Skincare is an integral part of the treatment for eczema. Dryness of skin due to eczema occurs since the skin is unable to retain moisture. As far as my daughter is concerned, her skin care routine during bath and before sleeping at night usually takes up to an hour at times. I also moisturize her in between as many times as required depending on the weather and skin condition. She gets quite frustrated at times since it’s quite elaborate, but there is really no choice. For someone who such severely dry skin we have to take all precautions to prevent her skin from drying out.

Bath routine

The process that I follow is that of “moisturize and seal”. The skin is moistened during bath time and then followed immediately with sealing the moisture in. Also, I am very careful about the bath products that I use on her. I use only non scented, soap free cleansers on her skin . And if her skin has flared up a lot, I sometimes avoid applying anything on her skin at all apart from water or just sponge her gently. The bath is usually kept short to about 2-5 minutes to avoid further drying out of her skin. The steps that I take for her bath are as follows-

  • a short (2-5 min) bath that helps moisturize the skin
  • use some kind of emollient or bath oil/oatmeal powder in the water
  • use a soap free moisturizing cleanser on her
  • apply a thin layer of liquid paraffin to seal the moisturize (if required)
  • pat her skin dry (not rub)
  • apply moisturizer (ointment or cream depending on weather) as soon as possible before the skin becomes completely dry

Cleansing

Soap substitutes and bath emollients are very useful to clean and moisturize skin prone to eczema. I use bath emollients like Hydromol/ Oilatum bath emollient or oatmeal powder to add to her bath water to provide additional moisture to her skin.

Based mostly on the experiences of other parents across the world (through their blogs and other interactions over the years) I completely avoid bath and skincare products which have Sulphates in them and Sodium lauryl sulphate (SLS) in particular.  Some studies have shown that Sulphates and SLS in particular can damage the skin barrier in people with healthy skin as well. (Source: http://www.eczema.org/aqeoushttp://www.ncbi.nlm.nih.gov/pubmed/14728695)

SLS is a synthetic detergent (cleaning agent) and surfactant (which means it makes bubbles). It is used in industrial products such as car wash soap, engine degreasers and floor cleaners. But it is also used in a wide range of personal care products such as soaps, shampoos and toothpastes to create lather.  While it is known to irritate skin when it comes into contact with products which have high doses of SLS, it can also damage skin of children with Atopic Dermatits. Usually, regular baby bath products contain Sodium Laureth Sulphate (SLES) which is gentler than SLS and is used to produce foam.

Last year when Aiyana’s skin condition was not improving at all was the time I decided to cut out this group altogether. I found options like Calfornia Baby products which are not only free of SLS and SLES but are also free of preservatives like Parabens. Instead they use coconut derived amino acids in their lotions which act as preservatives but are actually antioxidants; gluconolactone (corn) (and) sodium benzoate, an approved preservative for organic products in their shampoos and body washes. I am sure there are other such products which are equally gentle on the skin but as of now I am sticking to this range since I really do not want to take any chances with her skin care. It has proven to be gentle enough to be used even when her skin was not in a very good condition.

Oilatum Bath Additive Oil

Oilatum Bath Additive Oil

There are other less expensive options which I have used for Aiyana like Aveeno bath products (for e.g. Aveeno Skin Relief Body Wash); Oilatum bath emollientHydromol bath emollient and E45 cream and emollient. These have also worked well for her in the past and I still use a few of them (like Oilatum and E45) off and on both my children depending on their availability and skin condition. The paraffin based bath oils and creamy washes are good options in the summer months in a humid climate in our country. I have used the ointment form for cleansing (Epaderm and Hydromol ointments which are emollients and cleansers- all in one) a few times for my daughter when her skin had become extremely dry during the winter months. But I suppose for most children the bath oils and creamy washes should do the trick.

Products

  • Aveeno body wash is an oat based creamy wash;
  • Hydromol bath and shower emollient and Oilatum bath additive emollients are both liquid paraffin based bath oils (they also have cream based washes)
  • E45 has a cream wash and an emollient bath oil which work as a cleanser; Epaderm is in the form of a 3 in 1 emollient, bath additive and skin cleanser in ointment form
  • There are also other bath additives and creamy cleansers from Cetaphil, QV, Eucerin, Neosporin Ecema Essentials amongs others

    Epaderm 3 in 1 ointment

Availability

  • Aveeno products are usually available in Mumbai based stores like Just Moms (Breach Candy), Green Bell (Juhu), Amarsons. They can also be bought online from amazon.co.uk or amazom.com and a few sellers do ship them to India
  • Oilatum is readily available in most big chemist shops
  • Cetaphil, Eucerin and E45 are sometimes available in the same shops I have mentioned above
  • Hydromol and Epaderm is available in the UK and I buy online from amazon.co.uk or request my friends to get it for me
  • QV and other brands like Neosporin are available in the US and can be bought online through amazon.com but are not shipped by all sellers ( I am trying to figure out a way to get Neosporin Eczema Essentials Products for Aiyana since they are being recommended by quite a few parents)

E45 wash cream

Moisturizing routine

Emollients are found in various forms like creams, lotions and oils and are essentially used to moisturize dry skin.  I have already mentioned in details the moisturizing routine in my earlier post “Moisturizers and Eczema”. There are many products from brands like Exomega, Cetaphil, Avene, Hope’s Relief Cream. I have tried various products at different points in time depending on her skin condition and availability.

But the most important thing is to quickly seal in the moisture after bath while the skin is still moist after being patted dry.  Also, when the weather is hot and moist (mostly the case in Mumbai), I go lighter, meaning I use creams and lotions (if it’s very hot and humid lotions work well during the day); when it’s cool and dry I go heavier, meaning I use ointments or creams to provide better moisturization for my daughter.

I hope this article helps in giving you some basic pointers on the skin care routine that is so necessary for children (or even adults) with eczema to keep their skin healthy and their lives as normal and comfortable as possible. Please feel free to share your experiences and write to me with your questions if any! 

When the going (eczema) gets tough…..(part 1)

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Aiyana and Shaunak in Goa

After Aiyana’s (and our) experience with Erythroderma in September 2012 we decided to take a much needed vacation. We ( Sudip and I, my mother and the kids) went for a one week holiday to Goa during the children’s Diwali break in November 2012. Goa is a small state in India on the Western coastline known as the Konkan region and is famed for its silvery beaches and is visited by tourists from all over the world. While we had a good time overall, her skin condition was just kept under control with oral steroids and immunosuppressants. Due to this reason, as a family we had decided to keep her away and stay away from the sea water and the swimming pool (the chlorine in the water tends to irritate sensitive skin).

Also, since Aiyana had been kept on a gluten free diet after her Ige ( blood allergy test) test had come positive to wheat allergen, it did pose some challenges as far as the food was concerned.  In order to manage her dietary restrictions, I had figured out the alternative food choices and some good gluten free products like Orgran and Bob’s Mill which are available in Mumbai (I wil be writing more on this in a separate post) . The hotel that we were staying in were also extremely helpful in catering to our special dietary needs and used to make us special gluten free parathas/rotis etc from the mix that I had taken with me. Overall I think we managed pretty well considering that in India dietary needs like gluten free/nut free/diabetic/allergy specific diets are not usually catered to in most places yet due to various reasons. As far as gluten allergy (foods containing gluten includes wheat or atta, maida, barley, malt, semolina or sooji) is concerned, it is quite uncommon in India and most people are not well versed with the specifics of this diet.

Under the influence of oral steroids (which we had started tapering) and after introducing an immunosuppressant (Cyclosporin)in September, her skin was much better overall. Itching however never completely went away.  The drug dosage was increased very slowly to the optimum level (depending on her weight) since the doctors did not want to take a chance with any adverse  reaction. With a powerful drug like Cyclosporin, it is imperative to monitor the effects ( increased blood pressure and reduced kidney function amongst others) of the drug on a regular basis. Hence, weekly blood tests were carried out initially after which it was carried out fortnightly and then monthly towards the end. I don’t know which was more traumatic for Aiyana, the skin condition or the blood tests.. This constant monitoring which is required made it difficult for Aiyana to go through with this treatment, but there was no option as such.

After consulting a Mumbai based senior pediatric dermatologist, we also started narrow band UV (ultra violet) treatment or phototherapy for her in November 2012. It is a type of treatment for adults and children with moderate to severe atopic dermatitis (also used for psoriasis) who have not responded well to other eczema treatments. Exposing the skin to UV light suppresses overactive skin immune system cells that cause inflammation and hence can control itching and rashes. The benefits of using phototherapy are that these therapies often work when other eczema treatments have not, and if done properly in a controlled environment and under supervision they can actually have fewer side effects than many of the prescription medicines used for eczema. In Aiyana’s case, her doctors wanted to eventually stop all oral medications and control her eczema with the help of narrow band UV therapy only.

Narrow band UV booth used for phototherapy

Narrow band UV booth used for phototherapy

So, while Phototherapy treatment continued, oral steroids was stopped completely in December 2012 and Cyclosporin (immunosuppressant) was stopped in February 2013. Her skin was overall in a good condition till the time that these medications were being given to her. Phototherapy treatment,  which had been started earlier was then continued as the solo treatment for her till April 2013. Phototherapy as a treatment did not prove to be very effective for Aiyana and her skin condition started relapsing  once again in April and within a few days became extremely dry, scaly and itchy. No amount of topical applications and moisturizers helped to control the same and Aiyana had to be once again put on oral steroids from mid April to stop it from deteriorating any further.

The good thing was that we had already planned for and arranged a trip end of April to meet a well known pediatric dermatologist in Great Ormond Street Hospital for Children and a pediatric allergy specialist in London. We came back to India and started her new medication at the end of May 2013 (I will write about our experience in Part 2 of  this post a lot happened after we came back and it might be an important lesson for parents using immunosuppressant for their child ) .While the results were not exactly what we had hoped for it did clear up some doubts as far as her allergies were concerned. The pediatric allergy specialist did a much more accurate (and painless) scratch test and patch test for her allergies and we were then able to include most of the foods back in her diet barring tree nuts (walnuts, hazelnut, peanut etc).

However, things were to become much worse for us before we got it back under control. There are so many things I wish I could have done differently for her if only I had known what was about to happen. But that is only wishful thinking on my part since it is only in hindsight that we have the perfect vision!

But what I do know is that we all do what we can for our children and that I will never give up finding the best possible treatments and course of action for my daughter. She is such a brave little girl who needs all my love, strength and support to see her through this difficult phase in life.